medication worn off (rant that most of you wont like..)

rileymcc · **Posted:** Sat Dec 10, 2011 6:50 pm

ugh, well that medication i get injected into spastic muscles every 6 months has worn off again. i honestly thought it'd work this time, but no. i worked my $@! of excersicing my muscles nearly every day. not even a difference. to have that relief from the immense tension i experience in my right limbs is such a great feeling, but to get it taken away from you is, well, theres not a word to describe it

. and what really sucks is being told by the rehab doctors theres no way to permanetley make it better, so they expect me to keep coming back every 6 months for the rest of my lousy life to get the useless medication injected into me(yeah, right...) :roll:

i cant even play guitar at the moment cause its so bad...

sorry for my rant, just had to get it off my chest somewhere...an i know it may come off as attention seeking, but trust me its not

Gorgon · **Posted:** Sat Dec 10, 2011 6:52 pm

What is it that's wrong with you? why do you need those injections?

rileymcc · **Posted:** Sat Dec 10, 2011 6:57 pm

i have spasticity in my both my right limbs

http://www.youtube.com/watch?v=wfYNgYgEUoQ

this

Buxom · **Posted:** Sat Dec 10, 2011 7:01 pm

Don't feel too bad. At random times during the day my left leg kicks forward for no reason. I also have to be tested for learning deficiencies because I can't keep up with anything math related above 5th grade level. I can't even do long division.

There were revolutionary doctors in China, I believe. They cured the worst skin condition in the world apparently. It was on Discovery channel a few months ago. I forgot their names though.

rileymcc · **Posted:** Sat Dec 10, 2011 7:07 pm

i've had it though, i just want to be normal like everyone. i bloody hate being physically disabled, its tormented me long enough. my only plead is to get rid of this hell like muscle disorder and get on with my life

scarleg · **Posted:** Sat Dec 10, 2011 8:15 pm

rileymcc wrote:

ugh, well that medication i get injected into spastic muscles every 6 months has worn off again. i honestly thought it'd work this time, but no. i worked my $@! of excersicing my muscles nearly every day. not even a difference. to have that relief from the immense tension i experience in my right limbs is such a great feeling, but to get it taken away from you is, well, theres not a word to describe it

. and what really sucks is being told by the rehab doctors theres no way to permanetley make it better, so they expect me to keep coming back every 6 months for the rest of my lousy life to get the useless medication injected into me(yeah, right...) :roll:

i cant even play guitar at the moment cause its so bad...

i know i maybe crazy for wanting this, but most of the time i'd rather have my right hand amputated than dealing with the constant tension. heck, i litteraly can not do anything with it, an it just holds me back even when i'm not using it so why not?

sorry for my rant, just had to get it off my chest somewhere...an i know it may come off as attention seeking, but trust me its not

Sorry Riley.It must be extremely frustrating for you.I hope things turn around for you and you can figure out how to somehow deal with the bummer situation your in.I will say a prayer for ya bro.When you say right limbs is that hands,arms ,legs?Just curious
Eric

dharma47 · **Posted:** Sat Dec 10, 2011 8:24 pm

Sorry to hear of the colossal bummer Riley. I remember quite awhile agp you were so hopeful that things would change.....don't lose hope, in the future new procedures or medications may eliminate the problem all together....hang in there and best wishes :wink:

Danny Duke · **Joined:** Thu Jan 20, 2011 2:00 pm **Posts:** 3063

Rant All you like Brother. It must be the s#$%^ to be messed up all the time. Never give up the fight. There's always hope, You'll get better you'll see.
----Danny,

GTG · **Joined:** Sat Jul 21, 2007 1:08 pm **Posts:** 1307

Don't give up hope Riley. We can't do that. You keep fighting and win or lose you'll be a man with excellent character. A human is very adaptable. We can learn to live with anything. God bless you and keep you I pray.

Solid Body Love Songs · **Posted:** Sat Dec 10, 2011 9:39 pm

Riley, stay strong little Bro, you are an important and respected young member of this Forum and we are with you always. Love and mojo from Chicago, I hope the Doc see's this because he may have an insight for you that only a Doc could have. My first thought was for physical therapy, but, please forgive me as the economy here has me a bit off balance otherwise I would be sending you an attractive physical therapist to help right now. Your condition will improve, I am going to will it so (with a prayer or two for good measure) it just may take some time. Keep us posted.

rileymcc · **Posted:** Sat Dec 10, 2011 9:48 pm

ok so im trying to get another injection organised ASAP before i loose it. i will also tell the doctors if all else fails (which it has so far) that i'd like to get my right hand amputated, see if they think its normal for a person in my case to think that. physio's no use, OT's no use. this is as good as its gonna get. the only problem, how the hell do i tell my parents about amputation as a last resort?
and what really sucks, one of my school bands, symphonic band, has a performance tommorow in melbourne. theres no way i'm gonna be able to play that, especially considering its in front of people. and again, on wedenesday my other school band has a performance too.

scarleg wrote:

rileymcc wrote:

ugh, well that medication i get injected into spastic muscles every 6 months has worn off again. i honestly thought it'd work this time, but no. i worked my $@! of excersicing my muscles nearly every day. not even a difference. to have that relief from the immense tension i experience in my right limbs is such a great feeling, but to get it taken away from you is, well, theres not a word to describe it

. and what really sucks is being told by the rehab doctors theres no way to permanetley make it better, so they expect me to keep coming back every 6 months for the rest of my lousy life to get the useless medication injected into me(yeah, right...) :roll:

i cant even play guitar at the moment cause its so bad...

i know i maybe crazy for wanting this, but most of the time i'd rather have my right hand amputated than dealing with the constant tension. heck, i litteraly can not do anything with it, an it just holds me back even when i'm not using it so why not?

sorry for my rant, just had to get it off my chest somewhere...an i know it may come off as attention seeking, but trust me its not

When you say right limbs is that hands,arms ,legs?Just curious
Eric

yes, its my right hand, arm, leg and foot. left side is perfectly fine.

Buxom · **Posted:** Sat Dec 10, 2011 9:59 pm

Could you possibly have someone aid you in moving it to grip something above you and try to support your bodyweight? That may sound crazy, but it might help. Also, for helping muscles, get a lot of potassium. Eat a lot of bananas.

lungimsam · **Joined:** Sun Jul 10, 2011 12:50 pm **Posts:** 292

Don't amputate!!!
There could be a cure later. It would be a shame if you amputated in that case.

GTG · **Joined:** Sat Jul 21, 2007 1:08 pm **Posts:** 1307

I know you're mad at the offending hand. So maybe we can make a list of what it can do.

Push your pants down (for various reasons).

Help you with math.

Ring a doorbell.

$@!&* slap an offender.

Scratch the right buttock.

Can you think of any?

No457 Snowy · **Posted:** Sun Dec 11, 2011 1:07 am

G'day Riley,

I know this isn't the same as what you are suffering, from but I saw this Episode of Today Tonight about Deep Brain Stimulation and how can cure different problems involving uncontrollable muscles etc, like Tourettes Syndrome. I wonder it if may have similar usefulness in your case.

This is in Australia and there's also some contact info of the Doctor involved and the TT episode I saw in the link.

Check it out mate you never know where it could lead.

http://www.youtube.com/watch?v=nDkrD1uCGsM

Best Wishes, mate.

Snowy

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medication worn off (rant that most of you wont like..)

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